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Second Opinion

Hi. I am new to the site and may be jumping the gun but you all seem like a good group of people and a non-medical opinion would be appreciated. My 20 year old daughter has been having joint pain,fatigue, nosebleeds, and constant runny nose among other issues for years. Her pediatric Rheumy said maybe fibro or spondyloarthropathy. She hasn't been on any meds for the past 5 years so it isn't degenerative as far as the joints go. Summer of 2017 she had a really bad sinus/double ear infection and in November she was coughing up blood. They couldn't find a reason for it. Fast forward to Oct 2018. Another sinus infection and the urgent care doc found a hole in her septum. This is my concern. The ENT said that you don't just get a hole in your septum and none of the usual reasons applied to her. He referred her to a Rheumatologist to check for Wegners or Lupus. All the blood work came back normal and so did the chest x-ray. The Rheumy said nothing is wrong but nobody can explain the hole in her septum or other symptoms. I was not really comfortable with that doctor. So, should she get a second opinion. Or am I just being an over concerned mom? Be honest. Thanks so much!

Re: Second Opinion

As you should be a concerned mom...seems the doc is ignoring or not knowledgeable enough to recognize obvious concerns. You don't even know if the doc ordered the right tests. Don't know where you're at, but I'd be looking for another rheumy soon. Best to you & your daughter.

Knowing how to think empowers you far beyond those who only know what to think. -NdT

Re: Second Opinion

Thanks for your kind words. I think we will get another opinion. We are from the Chicago area. I think there is a good doc at Northwestern. Anybody know of someone near Chicago they would like to suggest?

Re: Second Opinion

The ENT may have known more than the rheumatologist. He could have done a nasal biopsy quite easily, and the rheumy could have referred you back to him for that. Nasal biopsies aren't always conclusive, but mine was, and it would be worth a try. My ENT just went ahead and did one once he saw my saddle nose and a hole in the bony part of my septum. And yes, you should find another rheumy and make sure he or she has experience with WG. The symptoms you describe sound like classic WG/GPA. Being from the Chicago area, I'll bet someone here can make a recommendation.

Re: Second Opinion

Hi Christine,
You are not over concerned, you are rightfully concerned. I just messaged one of our members, John. I seem to remember he goes to Loyola in Chicago and Cleveland Clinic. I am nowhere near so can be of no help in that direction.
I can tell you I was never diagnosed for years. Had many unnecessary sinus surgeries. Was told with my Spondylitis to go to PT, and then told to have surgery. I did not.
From what I have learned Wegeners can be tricky to diagnose. If they are only going by C-Anca readings that can be deceiving. My Rheumatologist told me there are many things to take into consideration. Also, did they take a biopsy of her sinus? Absolutely necessary.
Pete gave you good advice about the vasculitis site. Yes, she should definitely have a second opinion, by someone experienced in treating this disease. Once you follow our site you will see we ask questions, assert ourselves and do not hesitate seeking fine medical care. I know that is easier said than done, but stick to what you know in your gut is true and follow that instinct.
Masha

Re: Second Opinion

Hi Christine,

If traveling to Cleveland is not out of the question, there are several great vasculitis docs at Cleveland Clinic. I see Dr Villa Forte there and she's awesome. I've also heard good things about Dr Langford.

Getting to the Clinic from Chicago would involve flying to Cleveland where you can take the Rapid Transit train (similar to Chicago's Blue and Orange lines) to within walking distance of the Clinic. There are two hotels on/near the Clinic campus. There are numerous restaurants in Little Italy, just a short distance away.

Pete
dx 1/11

"Every day is a good day. Some are better than others." - unknown

"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

Re: Second Opinion

I followed your link and found someone that specializes in vasculitis. Am waiting to hear back on getting an appt. I will ask if she has specific experience with Wegners. I think she does. Thanks for the link!

Re: Second Opinion

Hi Masha,
Sent a request for an appt with a doctor from the link Pete sent. When we see her I will ask for a sinus biopsy if they don't suggest it. She seems to have experience with Wegners but I will confirm it when they call back. Thanks so much!